Tag Archives: hops

‘Advocating for Another’ month at WEGO Health

August is ‘Advocating for Another’ month at WEGO Health and they’re focusing on the needs and conversations of both parents and caregivers.  As part of that, they’ll be holding regular panel discussions during the month of August focusing on parenting and caregiving topics like how to care for yourself while advocating for another, parenting and special needs, and transitioning care.  They’re hoping to involve anyone who is active within the parenting or caregiving communities online so I hope you’ll join in: http://info.wegohealth.com/hartpc

Disability Blog Carnival – #83

Yes, this is a sunflower; Riley made it at school today.  I think it’s beautiful!

We’re on our way to The Family Cafe.  Hope to see some friendly faces there.

Disability Studies, Temple U. organizes a Disability Blog Carnival.  This month the host is Never that Easy.

Link up any disability post of your choice by June 25th and please make sure you visit and explore each of the entries.


Information Management for the Tired Mommy

Medical appointments are a challenge in many regards.  For one reason, every appointment begins with the whole list of questions or forms.  Even when the office already has several folders worth of Riley’s information, I get to go over every event and medication again.  Unfortunately, I do not have instant recall of each medication, dates of surgeries over a lifetime or diagnostic procedures and scans last completed.

In Need of a Home

Forget Me Not Fridays


The Canine Heroes of 9/11

Blogging Worldwide

 Found the a wonderful surprise in my email this morning:


Riley's Smile


Mary Rebecca created the adorable new Riley’s Smile Button for her Blogging Worldwide project.
Isn’t it great?
The boys and I are on our own again this morning.  John is working yet another Sunday and sees this Sunday morning only project going through next summer.  I am missing my husband and the boys definitely miss their Dad.  Ronan is being a very understanding six year old.  He rose as usual before 6 am, got out of bed on his own, dressed and came downstairs and entertained  himself (or rather cared for his herd) on Webkinz allowing me to focus on Riley.
Have a safe and wonderful Labor Day Weekend.

If you stumble by my post today – Please link up with me at the sites below


Enter a Giveaway


Nine Years of Riley today!




Seizing Logic

October 19, 2008

Seizure’s did not come every day or even every week during Riley’s sixth year.  When a seizure did arrive, it was an Event.  Occasionally it even meant calling in paramedics and a trip to the ER to put an end to Riley’s convulsions when our own medications and interventions were not enough to help him.
One day, driving my boys from one appointment to another, Ronan observed a Walgreens drugstore.  He explained to me as we drove by the landmark in his matter-of-fact three year old manner: 
“If I go to Walgreen’s, I don’t have seizure’s!”
He had put it all together!  

He recognized Walgreens yet the McDonald’s next door to it went unnoticed.  Not many three-year olds have seizure in
their vocabulary or need to consider how to manage the disorder.  I laughed. I cried.  How sad that he had to understand seizures.  How amazing that a three year old was planning how not to have seizures.  

 We are all special… by Stacie Wiesenbaugh

The Donation by Donna Lee

As promised in Prayers Received and Accepted, Donna is sharing the details of harvesting her stem cells for her brother.

On Tuesday, the 16th, 9 am, aftergiving myself a final shot of Nuepogen, I was hooked up to the machine which draws the blood from my left arm, collects my stem cells, transferring them toa bag, and replaces my blood back to my body (heated) through my right arm.  I expected it to be like giving a blood donation but soon discovered that it was a little more trying then that. 

I was all set up on my lounge chair,legs up, head back, laptop on my knees, books by my side and snacks.

I thought this would be a 6 hour leisurely process, including movies, books and food; my body reacted otherwise. Because calcium is being drawn from your blood, you start to shiver, shake and tingle.  It was a very strange sensation, which meansyou need to suck on some tums and be hooked up to calcium. After awhile, that tingling sensation turns into numbness, exhaustion and apathy.  You feel as if your soul has been drained ou tof you.  As a matter of fact, you feeljust plain lousy.  However, when I wastold that the bag is filled, the target has been reached and you are being unhooked, I knew I would have done it again.

Throughout the process I held hematite stones in each one of my hands, with the intent of transferring them to my brother’s hands on the day of his infusion.  I kept repeating to myself that this is going work, that I am giving good, healthy healing cells to my brother.  At the end of the experience, I broke down in tears of relief: 1) because of the realization of how much the people around me are suffering, and 2) knowing that this bag of gold will soon give my brother new bone marrow, good health and well-being.

Yesterday, the 16th, my sleeping brother received the stem cells. The hematite stones were placed next to his right and left hands. After 2 hours, when the process was done, I removed the stones to put in the sun lit window, which practically burned a whole through my palms. That blew my mind!!!

My brother, Brad, is feeling reasonably well and now it is a matter of keeping him comfortable, in good spirits and positive so that he will absorb the new cells.  Prayer, meditation, laughs and love are thedaily requirements.  Taking each day as it comes is another.  I am looking forward to seeing what today brings. Shabbat Shalom, Salam, Peace.


Sign up/recruit now for the U.S. Disabled Sailing Championship -Sept. 22-25 at Larchmont Yacht Club, NY . It will be a wonderful regatta and are just waiting for the sailors to register.  There is a novice fleet too, so if you know any rookies, please encourage them.

Smart and Trendy Moms

Prayers Received and Accepted by Donna Lee

I am not a religious person but have become a true believer.

Every since I got the phone call from my brother, Brad, requesting that I swab my inner cheeks and send the DNA kit back to the Bone Marrow Transplant Center, at Presbyterian Cornell Hospital, I knew my prayers would be received and accepted. I knew I was a perfect match and that I would donate Bone Marrow to my brother, who is one year older than I, 55 years of age.
He has been ill for many years, starting with lymphoma,and now a rare type of leukemia, called Myelogenous.
I received the news, while visiting in Israel, that I am a PERFECT match. I jumped out of my seat and started to dance the hora,thanking God, mother earth, the universe and all my friends who prayed for us.Terry taught me how to read the psalms, Sandy came to temple with me, Julie accompanied me to the Wailing Wall, in Jerusalem, where I put a note in for Brad and placed my hands on the stone, feeling the vibrations. It was time  to come back to the USA. With a phone call the ticket was changed and I am here. My brother’s white and red blood cells and platelets have risen, after receiving many infusions and is home with his family for a few days. I will start to receive “booster” shots, which will turn my super duper bone marrow into even a more enhanced product, leading us to the donation,which takes place next week, which my brother will receive the following day.   
The harvesting begins. My job is a breeze and I will tell you all about it in my next message. My brother has a very long and rough road, but he has many angels walking with him now. thanks EVERYONE.   B’ahava and Nameste.

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